The constant try this supplement, now try that drug, approach is getting us nowhere. At the same time doing nothing isn't going get us anywhere either. Personally, the only promising thing coming out the community is Ghost's dna testing initiative. Lets stop the cycle and get up off our asses.

So many times people have spoke of the need for a PSSD foundation, yet squat has been done in that direction. This procrastinating has to fing end. Either someone step up to the plate or I will (please someone else cause I really don't know jack about running a foundation.)

Lots of people have different opinions and don't always "get along," but we can all agree this shit has gone on long enough. The suffering needs to end! Lets put aside our egos and differences. Lets kick the stuff we argue about and give a united front on what we can ALL agree with.

I propose we get the foundation going with a goal of lobbying for PSSD to be designated a Orphan Disease.; then securing grants based on the designation.

"An orphan disease is defined as a condition that affects fewer than 200,000 people nationwide" shit, that sounds like us.

"Many rare diseases or conditions can be difficult to diagnose and manage because in their early stages, symptoms may be absent or masked, misunderstood, or confused with other diseases." damn, that sounds like us too.

"As disparate as rare diseases are, patients share many common frustrations. For example, for one-third of people with a rare disease, getting an accurate diagnosis can take one to five years. And people often are so isolated that they may never know anyone else with the same disease. Patients often must travel long distances to visit the few doctors knowledgeable about their illnesses, and the costs involved with diagnosis, treatment, and other related expenses can be exorbitant." sound familiar?

"This changed in 1983 when Congress passed the Orphan Drug Act (ODA). The ODA created financial incentives for drug and biologics manufacturers, including tax credits for costs of clinical research, government grant funding, assistance for clinical research, and a seven-year period of exclusive marketing given to the first sponsor of an orphan-designated product who obtains market approval from the Food and Drug Administration for the same indication" why not for us?

This people is what we should be shooting for. This is our BEST bet. Yes it will be more difficult than making it sound.

We got to scrounge and gather every whiff of evidence/research we can. We need better follow through on Ghost's current work. These two things can be vital in the first step... getting the medical community to finally listen enough to at least consider the possibility of PSSD. From there we push for the designation... onto a possible treatment.

TDLR

"The Orphan Drug Designation program provides orphan status to drugs and biologics which are defined as those intended for the safe and effective treatment, diagnosis or prevention of rare diseases/disorders that affect fewer than 200,000 people in the U.S., or that affect more than 200,000 persons but are not expected to recover the costs of developing and marketing a treatment drug" Lets use it to our advantage

p.s. here's a shout out to my beloved moonwife for uncovering this possible avenue.

Share On:

Good idea, but I spent a while trying to convince Wikipedia to reinstate their post on PSSD and they didn't think the numerous studies, information etc. we had was enough to warrant it. So before we have any chance of doing something like this I think we need to perfect the way we present the case for PSSD. I made a post about this a while back: viewtopic.php?f=10&t=1854&p=17778&hilit=the+case+for+PSSD#p17778

PSSD Since March 2016 after 4 weeks on SertralineConditioned worsened and peaked in April, since then possibly seen a 20% improvementWould be useful for data collection if people could add their histories in their signature